I agree with you. Also, my understanding is ... or was until now, untess I can be corrected ... that Dementia and Alzheimer's cannot in and of themselves be a cause of death?
Correct! These conditions are not a cause of death in themselves; what kills folk is progressive brain disease/dysfunction that can lead to lethal falls, stroke, infection, malnutrition etc. Falls can also induce pneumonia.
There is a fine balance between retaining dignity and bodily autonomy, and providing a clinically excellent and totally safe care environment.
For example, my mother died of a small heart attack shortly after taking a fall as she was returning to her bed from the loo: but this was in her own home: as she wanted, she was well into her 90's, and her quality of life was better that way than if she had been removed to a nursing home: actually - with a live-in carer and lots of family support too - she had the best of both worlds.
Thats a tricky one: both my father and father in law died at advanced ages (87 and 99) - both had dementia and other conditions, and both stopped eating and drinking in the last few weeks. It would have been cruel to force-feed them, in my humble opinion.
Quite so. Sometimes there is no solution to what is essentially an intractable problem and our care homes had to pick up the ungodly mess generated by an NHS executive who made ill-informed decisions.
As someone who has provided intimate personal care of old people up to the point of death, I'd probably conclude that many simply 'Lose the will to live' in the final weeks. Technically this causes multiple organ failure, and pneumonia often plays a part too, but I dont think 'Died of old age' is an unreasonable statement, and it can give comfort to the bereaved, as opposed to a load of alien clinical gobbledygook.
Good article John. I've been away for a while but enjoyed the read and concur with your a analysis on the basis of the data (and the uncertainty introduced by the WHO!)
aha! I have a new thought: well not that new at all really, this goes back to my own experience of both hands-on caring for very frail old people, and also managing major institutional closure programmes in the NHS in SE Thames region and Scotland from the mid 1980's onwards...
We know that deaths increased significantly in vulnerable populations of very frail elderly people following the forcible closure of institutions and their transfer to new accommodations. The death rates often doubled for a period of a month or two, then stabilised at porevious rates.
And I can think of at least three possible reasons for this:
a) anxiety and fear - caused by loss of familiar cosy surroundings, loss of personal autonomy, etc
b) loss of continuity of care staff - (who generally had intimate knowledge of the individuals dietary and medical needs)
c) the stress and turmoil of the actual physical move itself
There are some good journal studies about this effect, but I haven't done a literature review or anything like that:
Enforced relocation of older people when Care Homes close: a question of life and death?
Care Homes are usually seen as the last refuge for older people but residents are sometimes required to move between homes for administrative purposes. There is concern that such moves threaten their well-being and survival. Relocations have been contested repeatedly in court. A recent ruling and its review of case-law and literature provides guidance for practitioners who may be consulted for advice in this demanding situation.
"In spite of public outrage about the quality of institutional care for the elderly and mentally ill in the 1960s, which led to the formation of the Hospital (later Health) Advisory Service [2], further scandals followed. One was at Fairfield Hospital in Bury. Fifteen elderly women with dementia were moved from ward 17 to cold, ill-suited Musberry House at Rossendale General Hospital December 1973. Seven died within the next month and nine within the first 3 months. Only four survived a year [3]. The Bury-Rossendale Inquiry drew attention to the hazards and responsibilities associated with movement of older people for administrative or economic convenience. It concluded prophetically that ‘transfers of groups of patients are likely to become more common, particularly in the fields of psychiatry and geriatrics’."
Well, I had forgotten this, tba, until your articles and data triggered my memory. Where it is especially helpful is in giving us some comparative relative data and lived experiences.
It seems to me from the Fairfield Hospital example, in the rather unfortunately named Northern English town of Bury, that just about everything went wrong, and that hard lessons were learned at that time. What may also be true is that those lessons were also forgotten in 2020, and that, should there be an Inquiry into excess deaths in UK nursing homes in 2020 following the precipitate and unplanned transfers of large numbers of frail NHS hospital patients (aka 'bedblockers' into Nursing Homes, , that this former experience and precedent should be raised, because relatives have every right to be horrified if proper discharge planning was circumvented for the sake of expediency and panic rather than patient care.
And here are the Best-practice mitigations: I would suggest that many of these might well have been ignored in the general panic:
Good practice towards reduced stress and better outcomes
Pre-relocation
• Inform residents and families individually and as soon as possible when relocation becomes a probable option
• Make careful plans for individual residents, groups of individuals and staff. Make written records of discussions and share these with all parties
• Facilitate discussions and counseling with individuals and groups in anticipation of the move
• Undertake comprehensive medical and psycho-social needs assessment for every individual in association with their family and current health and social care staff. Make any adjustments to care and therapy indicated by the findings
• Identify suitable alternative placements in association with the family and resident. Factors to take into account include: site, accessibility for family and friends, physical attributes (layout, space, furniture, temperature, etc.), number and mix of residents, staffing, management style and activities. Reports from inspecting authorities should be scrutinised and made available: factors such as rates of catheterisation, use of tranquillisers, physical restraint, pressure sores and contractures are informative
• Prepare handover notes so that continuity of health and psycho-social care can be ensured. Share these with staff of the receiver home in advance
• Arrange for familiarisation visits if this is feasible so that the resident and their family gain a feel for the receiver home and the staff and vice versa
• Arrange for staff of the donor home to be available to or within the receiver home during the first weeks of the placement
Relocation
• Be sure that all parties are aware of the date and the details
• Ensure adequate physical and staffing arrangements are achieved within the donor and receiver homes and that suitable transport is provided
• Ensure appropriate health checks at departure and arrival
• Ensure that a familiar and responsible person travels with the resident and carries with them documentation required for continued care, including health care, medication and equipment
• Relocation of groups of three to four residents together may have advantages
• The introduction of large groups within a short timescale may produce additional stress for residents and staff
• Ensure that each individual is welcomed and made to feel safe, comfortable and wanted
• Let family and the donor home know of the safe arrival
Post-relocation
• Organise a review of progress and current health and psycho-social care needs within 1 week and at 4 weeks and 3 months. These reviews to include the resident, their family and contributions from all relevant care groups. Act to rectify any problems as far as possible
• Provide orientation within the new environment
• Maximise stability and continuation of good practices from the previous home
• Provide opportunity to discuss and come to terms with the experience
• Facilitate an environment in which the resident and family know that their values and preferences are heard and will inform activities
• Keep records of key communications and monitor physical health, mood, cognition, participation and integration, quality of life and the views of family and friends who visit
But there is a potential 'Get Out Of Jail Free' card for the public authorities who chose to ignore Best Practice in the 'Pandemic': and these mean that a legal case for compensation might well be frustrated : see the Human Rights Act (HRA) 1998
This is in Article 8 (i) Read the caveats: 'except for Public Safety and The protection of health'.... which give Regina (et al) a reasonably strong defence:
Article 8: (1) Everyone has the right to respect for his private and family life, his home and his correspondence and (2) There shall be no interference by a public authority with the exercise of this right except such as in accordance with the law and is necessary in a democratic society in the interests of national security, public safety or the economic well-being of the country, for the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others.
I agree with you. Also, my understanding is ... or was until now, untess I can be corrected ... that Dementia and Alzheimer's cannot in and of themselves be a cause of death?
Correct! These conditions are not a cause of death in themselves; what kills folk is progressive brain disease/dysfunction that can lead to lethal falls, stroke, infection, malnutrition etc. Falls can also induce pneumonia.
All of which should not happen in well-run care homes....
There is a fine balance between retaining dignity and bodily autonomy, and providing a clinically excellent and totally safe care environment.
For example, my mother died of a small heart attack shortly after taking a fall as she was returning to her bed from the loo: but this was in her own home: as she wanted, she was well into her 90's, and her quality of life was better that way than if she had been removed to a nursing home: actually - with a live-in carer and lots of family support too - she had the best of both worlds.
Thats a tricky one: both my father and father in law died at advanced ages (87 and 99) - both had dementia and other conditions, and both stopped eating and drinking in the last few weeks. It would have been cruel to force-feed them, in my humble opinion.
Quite so. Sometimes there is no solution to what is essentially an intractable problem and our care homes had to pick up the ungodly mess generated by an NHS executive who made ill-informed decisions.
As someone who has provided intimate personal care of old people up to the point of death, I'd probably conclude that many simply 'Lose the will to live' in the final weeks. Technically this causes multiple organ failure, and pneumonia often plays a part too, but I dont think 'Died of old age' is an unreasonable statement, and it can give comfort to the bereaved, as opposed to a load of alien clinical gobbledygook.
Good article John. I've been away for a while but enjoyed the read and concur with your a analysis on the basis of the data (and the uncertainty introduced by the WHO!)
Cheers!
aha! I have a new thought: well not that new at all really, this goes back to my own experience of both hands-on caring for very frail old people, and also managing major institutional closure programmes in the NHS in SE Thames region and Scotland from the mid 1980's onwards...
We know that deaths increased significantly in vulnerable populations of very frail elderly people following the forcible closure of institutions and their transfer to new accommodations. The death rates often doubled for a period of a month or two, then stabilised at porevious rates.
And I can think of at least three possible reasons for this:
a) anxiety and fear - caused by loss of familiar cosy surroundings, loss of personal autonomy, etc
b) loss of continuity of care staff - (who generally had intimate knowledge of the individuals dietary and medical needs)
c) the stress and turmoil of the actual physical move itself
There are some good journal studies about this effect, but I haven't done a literature review or anything like that:
Enforced relocation of older people when Care Homes close: a question of life and death?
https://academic.oup.com/ageing/article/40/5/534/46619
"Abstract
Care Homes are usually seen as the last refuge for older people but residents are sometimes required to move between homes for administrative purposes. There is concern that such moves threaten their well-being and survival. Relocations have been contested repeatedly in court. A recent ruling and its review of case-law and literature provides guidance for practitioners who may be consulted for advice in this demanding situation.
"In spite of public outrage about the quality of institutional care for the elderly and mentally ill in the 1960s, which led to the formation of the Hospital (later Health) Advisory Service [2], further scandals followed. One was at Fairfield Hospital in Bury. Fifteen elderly women with dementia were moved from ward 17 to cold, ill-suited Musberry House at Rossendale General Hospital December 1973. Seven died within the next month and nine within the first 3 months. Only four survived a year [3]. The Bury-Rossendale Inquiry drew attention to the hazards and responsibilities associated with movement of older people for administrative or economic convenience. It concluded prophetically that ‘transfers of groups of patients are likely to become more common, particularly in the fields of psychiatry and geriatrics’."
see also ...
https://voxeu.org/article/rural-hospital-closures-increase-mortality
https://www.nber.org/papers/w26182
https://www.northcarolinahealthnews.org/2019/08/30/closing-rural-hospital-higher-mortality/
That's the stuff! Great comment.
Well, I had forgotten this, tba, until your articles and data triggered my memory. Where it is especially helpful is in giving us some comparative relative data and lived experiences.
It seems to me from the Fairfield Hospital example, in the rather unfortunately named Northern English town of Bury, that just about everything went wrong, and that hard lessons were learned at that time. What may also be true is that those lessons were also forgotten in 2020, and that, should there be an Inquiry into excess deaths in UK nursing homes in 2020 following the precipitate and unplanned transfers of large numbers of frail NHS hospital patients (aka 'bedblockers' into Nursing Homes, , that this former experience and precedent should be raised, because relatives have every right to be horrified if proper discharge planning was circumvented for the sake of expediency and panic rather than patient care.
Bang on, Rob, bang on!
Here are the risk factors identified in that Report
Vulnerabilities, stresses and approaches to best practice
Characteristics of residents most vulnerable to adverse effects
• Gender: males do less well
• Age: adverse effects more likely with greater age
• Dementia
• Depression
• Anxiety
• Regression or withdrawal in the face of relocation (expressed anger is protective)
• Impaired eyesight and/or hearing
• Reduced mobility
• Incontinence
• Multiple problems summate
Elements of relocation which are most stressful
• Sudden or unplanned moves
• Failure to assess and meet medical and psycho-social needs
• Multiple moves including temporary interim placements
• Discontinuity of care
• Lack of consultation with residents and families
• Lack of information and explanation of rights and options
• Highest risk in the first 3 months after relocation
And here are the Best-practice mitigations: I would suggest that many of these might well have been ignored in the general panic:
Good practice towards reduced stress and better outcomes
Pre-relocation
• Inform residents and families individually and as soon as possible when relocation becomes a probable option
• Make careful plans for individual residents, groups of individuals and staff. Make written records of discussions and share these with all parties
• Facilitate discussions and counseling with individuals and groups in anticipation of the move
• Undertake comprehensive medical and psycho-social needs assessment for every individual in association with their family and current health and social care staff. Make any adjustments to care and therapy indicated by the findings
• Identify suitable alternative placements in association with the family and resident. Factors to take into account include: site, accessibility for family and friends, physical attributes (layout, space, furniture, temperature, etc.), number and mix of residents, staffing, management style and activities. Reports from inspecting authorities should be scrutinised and made available: factors such as rates of catheterisation, use of tranquillisers, physical restraint, pressure sores and contractures are informative
• Prepare handover notes so that continuity of health and psycho-social care can be ensured. Share these with staff of the receiver home in advance
• Arrange for familiarisation visits if this is feasible so that the resident and their family gain a feel for the receiver home and the staff and vice versa
• Arrange for staff of the donor home to be available to or within the receiver home during the first weeks of the placement
Relocation
• Be sure that all parties are aware of the date and the details
• Ensure adequate physical and staffing arrangements are achieved within the donor and receiver homes and that suitable transport is provided
• Ensure appropriate health checks at departure and arrival
• Ensure that a familiar and responsible person travels with the resident and carries with them documentation required for continued care, including health care, medication and equipment
• Relocation of groups of three to four residents together may have advantages
• The introduction of large groups within a short timescale may produce additional stress for residents and staff
• Ensure that each individual is welcomed and made to feel safe, comfortable and wanted
• Let family and the donor home know of the safe arrival
Post-relocation
• Organise a review of progress and current health and psycho-social care needs within 1 week and at 4 weeks and 3 months. These reviews to include the resident, their family and contributions from all relevant care groups. Act to rectify any problems as far as possible
• Provide orientation within the new environment
• Maximise stability and continuation of good practices from the previous home
• Provide opportunity to discuss and come to terms with the experience
• Facilitate an environment in which the resident and family know that their values and preferences are heard and will inform activities
• Keep records of key communications and monitor physical health, mood, cognition, participation and integration, quality of life and the views of family and friends who visit
Fabulous commentary Rob, much appreciated. There is nothing like putting the flesh on the numbers!
Thanks!
But there is a potential 'Get Out Of Jail Free' card for the public authorities who chose to ignore Best Practice in the 'Pandemic': and these mean that a legal case for compensation might well be frustrated : see the Human Rights Act (HRA) 1998
This is in Article 8 (i) Read the caveats: 'except for Public Safety and The protection of health'.... which give Regina (et al) a reasonably strong defence:
Article 8: (1) Everyone has the right to respect for his private and family life, his home and his correspondence and (2) There shall be no interference by a public authority with the exercise of this right except such as in accordance with the law and is necessary in a democratic society in the interests of national security, public safety or the economic well-being of the country, for the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others.